Pain in MS: Interview with pain specialist

Pain is a very common symptom in MS and can have a huge impact on quality of life. It can also be tricky to explain and treat effectively.

To help understand pain in MS and how it can be managed, we spoke to MS pain specialist Dr. Henrik Heitmann.

Henrik is clinician and researcher at the Neurological Clinic, Technical University (TU) Munich, one of the top MS centres in Europe. During his time at the specialised pain outpatient clinic there he treated patients suffering all types of pain and related co-morbidities. He also researches the relationship between pain, depression and fatigue.  

Hi Dr. Heitmann, thank you so much for your time today. So firstly, pain is something that everyone is familiar with, but is pain in MS different?

A lot of MS patients suffer pain during their disease course. Compared to non-MS patient populations studies have found pain to be more frequent and severe in MS patients. Many patients rate pain as one of their most important symptoms. It can strongly impact a patient’s quality of life and contribute to disability and many days of sick leave among other things.

It also does not really make sense to ‘lump’ all types of pain together when having a serious discussion about pain in MS. Due to different mechanisms of how pain can be generated by the body, one has to distinguish different sorts of pain.

Understood, so what are the different types of pain in MS patients?

Generally we say there are two types of pain, nociceptive and neuropathic pain. Nociceptive pain is quite common and often linked to the musculoskeletal system. Neuropathic pain occurs in around one quarter of MS patients and is most likely caused by demyelination of nerve fibres, e.g. in the spinal cord.

With nociceptive pain, it is often not clear if it is directly caused by MS. If you take back pain for instance, it can be completely independent from MS. Or it could be indirectly linked to MS, for example caused by gait and posture problems due to an MS related weakness. On the other hand, spasticity as a typical symptom caused by MS causes painful muscle cramps and tension. Some patients also report mild pain in response to treatment such as headaches and muscle aches upon using interferon injection therapies.

The two types of pain feel very different.  Patients suffering with neuropathic pain report burning, stabbing, prickling or electrical sensation. Also, we consider trigeminal neuralgia (pain in the face/jaw area), Lhermitte sign (electric feeling running down the spine) and the MS hug (squeezing sensation around the torso) as specific types of neuropathic pain.

What are the different ways of treating pain? Can it be done at home just using painkillers?

There are different ways of treating pain depending on what the cause of the pain is and how it’s affecting someone. Like lots of other symptoms in MS, it may require more than one type of treatment. It’s always best to speak to your doctor rather than taking over the counter pain medication for a long period of time.

For example, spasticity-related pain needs to be addressed with antispastic medication, while neuropathic pain might require a special group of drugs that block certain ion channels to settle down overactive nerves.

Some of the drugs used for pain in MS are also being used for epilepsy or depression, which then sometimes confuses or scares patients if they see that they are being prescribed anti-seizure therapy. In medicine, drugs can be used for different purposes so patients shouldn’t be put off taking something or asking their doctor to explain.

Musculoskeletal pain and headaches generally do respond to ‘classical’ non-steroidal anti-inflammatory drugs like Ibuprofen or Paracetamol/Acetaminophen. Others might require stronger painkillers and in some cases even opioids.

So in short, it is a very individual approach that needs to be finely tuned, especially for chronic pain. Even more importantly, there are also MS-related comorbidities, for example disability and spasticity but also fatigue or depression, which require what we call ‘multimodal’ approaches.

Interesting, so there are overlaps with other common MS symptoms which are very important to consider when talking about pain?

Exactly. Pain has been related to higher disability, depression and fatigue in MS. Depression is common in up to 50% of MS patients, fatigue in at least 60% of patients. So this does play a huge role when we talk about pain. Especially, as those symptoms can strongly contribute to low quality of life, work absenteeism and social isolation.

We need to address the whole package when deciding on therapeutic interventions. One of them could be antidepressants.

We’ve talked a lot about drugs and therapeutic treatments, but are there ways that patients can treat pain which don’t involve drugs?

There are also non-pharmacological interventions like physiotherapy, relaxation techniques and cognitive-behavioral therapy just to name a few. An ideal concept to address pain is what we call ‘multimodal’, meaning it consists of several puzzle pieces. Good pain physicians can assemble these with patients bit by bit. But you do have to be patient, often it will involve trying lots of different things to find what works for an individual.

Speaking of which, do you have any advice for patients to help patients speak to their doctor about pain issues?

Documenting the pain symptoms in a diary can be very helpful. For example, how often and at which times of the day does the pain occur and where is it located? Does it interfere with sleep? What makes it better or worse? This information can help to guide the search for the best pharmacological and/or non-pharmacological strategy to alleviate the pain.

Thank you Dr. Heitmann for your precious time and helpful input!

Have you discovered the pain functionality in Emilyn yet? You can track pain when you log symptoms.

You should also note the times of the day, any triggers or interactions in the journaling function. Use voice-to-text if you have trouble typing all this.